Like a Lot of kids, eleven-year-old Marco was diagnosed with scoliosis during a routine check-up with his pediatrician. A local pediatric orthopedist measured and confirmed his scoliosis. No one was worried and the diagnosis certainly didn’t keep him from joining the rest of his sixth grade class on the playground or from competing in local swim-meets.
Then, in August of 2012 at a routine visit, his orthopedist noted that Marco’s scoliosis had suddenly gotten worse. She ordered an MRI to see if anything unusual was causing this change.
“Marco’s spinal curvature went from the mid 20s to the mid 30s [degrees of curve] in the course of roughly seven months,” says his dad Dom. “Marco had been experiencing a lot of mid-line back pain, but it was relieved with [over the counter pain medication]. The pain was made worse with physical activity but there was no pattern. It could occur any time during the day. Despite this, he was an avid backstroker and had his best season yet.”
Marco’s MRI came back positive for a large fluid mass, called a Syringomyelia or syrinx, in his thoracic spine (the area between his shoulder blades). A syrinx is an abnormal pocket of fluid within the spinal cord that can be caused by a number of neurological disorders.
Sometimes there is no known cause for a syrinx but as it grows, pressure from the excess fluid in the spinal cord can cause the spinal column to bend, resulting in scoliosis. When a syrinx is present in a child with or without scoliosis, particularly when that child is experiencing symptoms such as back pain, they are best evaluated by a pediatric neurosurgeon.
“Syringomyelia is a very rare diagnosis,” says Dom. “It is something that our pediatrician up here [Utica, New York] had never seen in her career and she’s been here for years. So once I got that diagnosis I did a ton of research.”
His search led him to Dr. Neil Feldstein. “He just felt like the right person to go to. There was nobody that rose up as brightly as he did in my research.”
Dr. Feldstein is one of the few doctors in the country to specialize in syringomyelia and related complex spinal disorders in children. Dom called Dr. Feldstein’s office. “He left no stone unturned,” says Dom. “He had made calls to Marco’s orthopedic doctor up in Utica. He organized the orthopedic team, and [his office] was wonderful; getting us appointments and getting things done for us and insurance issues. I am just humbled by the entire office.” A week later Dom and his wife Lisa drove Marco 220 miles to see Dr. Feldstein in his New York City office.
“Just from the second he shook my hand and took us to his office. I felt very comfortable,” says Dom. “It is something that isn’t really tangible. He just had that kind of aura about him that said, ‘your in good hands with me. I know what I am talking about.’ His ability to speak directly to Marco, who was only 11 years old…he does a very good job of putting things in a very palatable, very-easy-to-understand way.”
Dr. Feldstein performed a thorough examination and says, “Marco’s neurological tests were all negative. However, my concern was that this may not just be a simple syrinx and there may have been some form of underlying spinal cord tumor. We discussed the various options depending on whether there was a tumor or not. If there was one, then clearly he would require surgery and a biopsy to make sure it wasn’t cancerous. If there was no tumor then he still would require surgery because of the rapid expansion of the syrinx and developing scoliosis which I think would be difficult to control without treatment.”
Four days later, on September 10th, 2012, Marco was taken in for surgery. It took Dr. Feldstein seven hours to carefully remove the tumor. Despite its location within Marco’s spinal cord, he was able to remove the whole tumor and Marco was doing great. The pathology report and an MRI the following day confirmed that the tumor was not cancerous and Dr. Feldstein had gotten it all.
“The care [at the hospital] was tremendous,” says Dom. “We saw so many different doctors from pediatricians to Dr. Feldstein and the pediatric orthopedic team. The ICU staff, the doctors and nurses were tremendous. You never wondered where a nurse was. There was always great care there. They always made sure Marco was comfortable. I can’t say enough good things about the experience with Columbia. They were wonderful.”
After a quick recovery, Marco was released from the hospital. “The minute he got home he got out of the car himself, walked up to his bedroom, got changed and cleaned up and started catching up on homework,” says his dad.
A Couple of weeks later Marco returned to see Dr. Feldstein for his first follow-up and got a glowing report, “Marco is doing beautifully. Other than some occasional twinges of discomfort from his incision, he really has no symptoms. He is walking with ease, he is easily able to jump up and down and hop and turn on either foot. He is a competitive swimmer and he can’t wait to get back in the pool. I am very excited about the progress he has made.”
Two months after surgery, Marco competed in his first swim meet of the season. He placed well in all four races and turned in a personal best time in the 50 breaststroke.
“Marco is doing fantastic,” his dad wrote last February, just five months after surgery. “He is a competitive swimmer and has had personal best times in every meet he has participated in, since returning to the water. He is an amazing young man and continues to outperform everyone’s expectations. Since surgery, he has brought home near perfect grades from school, is active in our all-county band and continues to entertain us on the piano, cello and clarinet.
“It is hard to write this without tearing up. Everyday I think of what Marco went through and how thankful I am that Dr. Feldstein came into our lives. It is near impossible to verbalize how grateful I am to Dr. Feldstein and the entire staff at Columbia.”